Thursday, August 26, 2010

It's been a crazy summer with a new foster baby, work, church stuff, traveling and lots of visitors, but I'm back in the blogging world. Surprisingly, I can honestly say that I'm happier now living with an illness than I was when I was healthy. I found the following great article that reinforces how I feel.

10 Things I’ve Learned From Chronic Illness

There is some truth to the old adage “What doesn’t kill you will make you stronger” (even though I think that things that in fact may be killing us can still make us stronger). After my initial diagnosis I never thought that I would ever be able to be strong again but the past 7 years have taught me that I am stronger now than I ever was.

Sometimes you need to be like Gibbs and go with your gut. If you feel like something is not right, it probably isn’t and you need to learn to be your own advocate. Ask questions and push for answers. While you cannot trust everything you read on the internet, it is important to research and educate yourself.

Sometimes laughter is the best medicine. When I’m feeling blue, popping Finding Nemo can do wonders for my spirit, especially now that I can share it with my daughter. Dorie is a great doctor :)

Doctors are not always right and there is nothing wrong with asking for a second opinion. I’m not sure my Celiac would have ever been caught had I not sought a second opinion.

Buy cute pajamas to wear after surgery. It gives you a little bit of pampering when you need it most. If you know you’re going to be donning a hospital gown for a couple days, buy cute socks. Believe me, after 4 surgeries, it goes a long way!

Finding a support team/group is absolutely essential. I do not know if I would have ended up where I am today with the support of others. After my endometriosis diagnosis I was lucky to find GirlTalk (an online support group through the Endo Research Center) that I became a member of and now serve as the Program Director. During our infertility treatments, I found a wonderful group of ladies that provided support and encouragement. It doesn’t matter if you find a support group that meets in person or online. Knowing that you are not alone gives you strength to keep fighting the fight.

Cereal can be a perfectly acceptable meal for breakfast, lunch, and dinner.

Your faith gets challenged. While I never doubted God and His grace and love, I had my share of questions. And it was through the wrestling and searching for answers that I learned more about God than I ever did in seminary. Not that I have all of the answers to my questions. In fact I may have more questions know than ever but I know who I serve and I know that I can trust His character and that that is enough for me.

Find an outlet whether it is blogging, painting, or songwriting. Healing comes when we open ourselves up and acknowledge our hurts, hopes, and dreams. When I began this blog in 2007, I would have never guessed how redemptive it would become to my faith and health.

You are more than your disease/diagnosis. It is important to never ever lose sight of that. I am determined to let the world know that while yes I may have multiple illnesses, I am a person and a warrior and I will not be overcome.

Jamee is a wife, and a mom. She says, “I am also a warrior battling multiple chronic illnesses. In life, I have learned that sometimes things happen and life doesn’t always go back to the way things were. Instead, you must find a new kind of normal. ” Read her blog A New Kind of Normal.

Saturday, June 5, 2010

Wow, a lot to post about. You know I love a random post, so here I go...

I've been amazed at all the wonderful support we're receiving for our sweet foster baby. It's wonderful to have so many people treat him so wonderfully and serve us so much even though it's not your normal 'new baby' situation. It means so much to us. I just wanted to say thank you Mom and Dad for your visit, gifts, and all the love you gave him! Thank you for getting up in the night with him, for treating him exactly the same as all your other grand babies, and for welcoming him into the family so perfectly. Thank you book club (Kristi, Jaime, Katie, Meredith, and Alisha) for the shower you surprised me with. It meant a lot to me since our future with this baby is uncertain. Thank you Ully for the gift card. You are the sweetest. Thank you Liz, Leslie, Virginia, Deb, Kenna, and Deborah for the clothes, toys, and yummy food. Thank you Krist, Diana, and Steve for the packages with cute baby stuff! Thanks Amanda and Thevs for cuddling him so much at beach. Thanks Abs and Linds for the gift. I love the Puma outfit and all the awesome baby stuff! And thank you everyone else for the emails, phone calls, blog comments and offers to babysit! Our sweet baby is so grateful for all the love. And Catherine, you're the best. I am obsessed with your artwork. That is by far one of the best gifts I've been given!(If anyone's interested she can customize one for you. Just let me know and I'll get you in contact with her.)

I've noticed there's a great support system out there for new moms, I'm really grateful for that. As for chronic illness it's a different story. I thought I'd list some things that friends and family did for me during my most physically painful and exhausting times that helped to pull me through. Thank you family and friends for your examples of selfless service. I know oftentimes it's difficult for all of us to know how to serve someone that deals with different levels of physical illness day in and out. I want to raise awareness so that we can create a similar support system for people struggling with illness...

1. Meals2. Hopeful packages3. Calls, emails, or FB messages,4. Financial help with the insurmountable medical bills and the inability to work5. Asking how I was doing and really listening for the answer6. Cleaning house7. Showing genuine concern8. Flowers9. Small and simple thoughts to let me know they cared10. Prayers11. Advocating for me to others who don't understand chronic illness or invisible physical illness (when I don't always look sick, but feel it)12. Researching new info on my disease13. Remembering that it was a daily struggle and continuing to support and asking how they could help

Thank goodness I'm at a point where I can focus more on what others need instead of being in so much pain that I'm incapable of doing much. Thank you everyone for your amazing support during the last crazy painful years of my life. I'm in a much better place cause of all of y'all!

More good news...Yeah! I did a 10k. I walked it, (cause running increases my pain) but I did it. I feel grateful that I've come so far.Woohoo!

Saturday, May 22, 2010

So we got placed with a 2 month old foster baby this week. I can't say any details about his situation, but I can say that he is really adorable. We are so grateful he's in our home. His circumstances for being placed in a foster home are sad, but we feel blessed we can love him and keep him safe.

He smiles at me often and looks at me with so much love. He is precious. I feel like I've been given a million dollars and that nothing in the world matters as much as him. We don't know how long he'll be with us, but we hope we can be good parents to him while he is here.

Friday, April 16, 2010

Living with chronic illness requires a delicate balance between what I can and can't do. Thankfully I never thought I'd be able to do as much as I'm doing now. But obviously there are still things I wish I could do. I wish I could eat whatever I want, hike a trail, do some weight lifting (ha ha isn't that a random wish), sleep through the night, be able to function free of medication, get pregnant, go a day without pain, or even just run a mile without any pain.

Even though I can do a lot more now, people sometimes can't understand why there are times when I can do certain things and times when I have to cancel. They think "I saw her yesterday and she was fine. Why isn't she here today?" or "Why did she have to cancel again?" I read the following essay on this great chronic illness blog. (I'm not sure why she chooses to use spoons. Maybe just a random object to create a visual, but the principle is what matters.)

The Spoon Theory by Christine Miserandino

Let's face it. No matter how understanding people are, sometimes it's just daunting to explain our illness time and again to new people or even to the people we already care about. It's tiring. But if someone cares enough to read it or hear about it, the Spoon Theory sticks! In case you're pressed for time, I'll summarize: Imagine a bunch of shiny, dinner spoons in your hand. Each time you spend a little energy, take one away. So for someone with chronic illness, a spoon might be taken away with the simple act of getting out of bed (I know that's true for me). Miss breakfast because you're running late? Take away a spoon. Miss the bus and have to walk a few extra blocks to make it on time? Take away two. And if you have chronic illness, it's more than likely you have much fewer spoons to start with anyway...

That's the genius of the Spoon Theory. It helps people who are chronically ill help people who are chronically healthy to understand; to see that every decision and circumstance throughout the day has some kind of effect. Things most people don't even think twice about. In my days, everything must be measured and weighed. This can be very frustrating (even downright depressing). Whatever it is you feel, remember that you're allowed to feel it. Don't waste your spoons on feeling bad... about feeling bad! Most of us put so much pressure on ourselves to be strong and not let our illness "beat us", but why look at it this way? Chronic illness, by definition, is not going away -- so it's best not to make an enemy out of it (at least that's what I've found).

I give myself time to feel however I feel about my "spoon deficit". Sometimes I'm just pissed off. I want to cry or scream. Sometimes I'm actually quite motivated by it all. Sometimes I'm confused and questioning why life is just a little harder for me. Sometimes I feel proud that I've come this far without a full "spoon count". Sometimes I want to pull the covers over my head and give up or even pity myself (but this one can be tricky...I think it's important to put a time limit here, which I'll explain in a future post). No matter how we spin it, having fewer spoons isn't fair and it's more than okay to have a reaction to that. In fact, wouldn't it be strange if we didn't care at all? The way I see it, that apathy would mean someone else was in the driver's seat. Our feelings show we're still tuned in to our lives.

I might sound confident, but only recently am I starting to really own my limitations; to explain them to others without guilt. I owe a big part of that to the people who are now in my life (who I'll definitely single out later, don't you worry guys). These friends aren't easy to find, but they're out there. They've lightened this load for me and always, always understand. That brings me to the next point about the Spoon Theory. Of course, it's not all about LOSING spoons! Have a great talk with a friend? Laugh a little? Get a spoon or two back...there's no better medicine. Get a care package from a family member? Cuddle up with your dog? You'll definitely be up a few more. It's all a balance and it forces us to really think about our actions and weight what's important to us. I think that's the good that can be found here.

Instead of spending time feeling cheated, hurt or sad about our illness, is it possible that we can see our lack of spoons as an opportunity? It does make us stop and think about things other people don't have to, but here's an example of the unexpected good. Because of Spondylitis, I've come to realize who I can count on...who the people worth spending my spoons on are and who will replenish my spoon count. I've found ways to shorten my tasks at work because I have to. I've come to appreciate nights when I do have enough energy left to actually cook or clean - things I might otherwise see as mundane chores. Simple walks are tremendous pleasures. In some ways, dealing with illness can make you more efficient and much more appreciative of the spoons you do have. Thanks for reading :)

Thank you to all my friends and family that add spoons to my days :) And thank you to all my friends that understand when I have to rest, and I have to cancel plans. Love ya!

Monday, April 12, 2010

Sorry it's been so long since I've posted. Life has been so crazy. We also had our first semi foster parent experience caring for a little girl for a few days. I LOVED it. Learning about some of her emotional healing and reflecting on my own physical healing prompted me to do a post on suffering and healing. Now we all know I can be pretty random, so bear with me while I try to put my thoughts into a post.

Suffering: If you allow yourself to feel sorrow and pain, it can bring you to be exactly where you need to be. Pain has the potential to purify us. It's interesting how in our culture we avoid pain at all costs and we push through it, instead of allowing it to work through us. In Mark Matousek's book, When You're Falling, Dive, he travels the world interviewing survivors of pain and misfortune to discover the meaning of suffering. He notes:

...terror can be a door to enlightment...Our prevailing contemporary view of pain and loss as handicaps to be avoided at any cost is...wronghanded. Terror is fuel; wounding is power. Darkness carries the seeds of redemption. Authentic strength isn't found in our armor but at the very pit of the wounds each of us survive.

Dr. Rachel Remen, one of my favorite authors, was diagnosed at a young age with Chrohn's disease. She talks about how

healing is a mysterious process whose principles often contradict reason. Working with thousands of patients, shes has learned how often the body's intelligence defies expectations...The body is hardwired to persevere. If I cut you, your body will heal stronger than before.

She continues

When we try to avoid loss or plow through our pain, our lives are actually diminished. On the other hand, there's an extraordinary wisdom and clarity that emerges in people who genuinely meet their pain, not in theory but in life...the process of wounding actually awakens us to our strength. It shuffles our values. And the top priority is never what you thought it would be...It always turns out to be about love.

Through the suffering there can be transcendence and even perfect glimpses of what really matters in this world.

Now in regards to physical healing: When is comes to illness, something I've come to learn is that it's complicated. A lot of times we think that if you're sick surgery or a pill should fix you, and if it doesn't, then you have cancer or diabetes. We're not educated enough on the different levels of illness and how they can be treated, as well as how they affect daily life. My illness isn't cancer and it can't be fixed with just a pill or surgery (believe me I tried). But I am healing, and even though it's incurable and chronic, I've learned how to somewhat to manage it through medication, diet, level of activity, rest, physical therapy, massage, and exercises. I still struggle with less sleep, pain, fatigue, and I visit the doctor often, but I can manage the pain more than I ever thought possible. I'm also able to live a relatively normal life.

I also know my healing is also the result of hard work, research, faith, and blessings. They all work together. Here is a link to a video that talks about the tender mercies of the Lord. He's taking care of us.

Saturday, March 13, 2010

First, thanks everyone for the best wishes! I'm really grateful for your wonderful support during the foster parenting process. (I will keep y'all posted, but there are a lot of rules regarding the children's privacy, so we won't be giving too many details from here on out.)

Second, I need some new recipes. Has anyone made something recently that's yummy and healthy that they could email me or post in the comments? I'm desperate for some new food ideas. (Don't worry if your recipe calls for stuff I can't tolerate, I'm really good at finding substitutions for just about any ingredient!)

Doesn't it seem like everyone you know right now has a cold or recently had a cold? Here's a recipe I wanted to share. I was sick with a cold a week ago and invented this really amazing chicken soup. I'm not a good cook, but this was super easy. It did the trick too--my cold didn't last long at all. Here's a yummy way to get a ton of veggies into your diet. (Only use the veggies you like. You don't have to use them all.)

2 1/2 cups packaged noodles (5 ounces) (I like more veggies but you can add more the chicken or noodles if you prefer a more equal ratio of chicken and noodles to veggies)1 9-ounce package frozen diced cooked chicken (about 2 cups)

I read this really great book by Michael Pollan called Food Rules. It's only $5 at amazon and it has simple, perfect advice for eating healthily without feeling overwhelmed. You can read it in 30 minutes max and it is extremely helpful. Here are some rules I liked from the book.

Populations that eat a so-called Western diet generally defined as a diet consisting of lots of processed foods and meat, lots of added fat and sugar, lot of refined grains, lots of everything except vegetables, fruits, and whole grains--invariably suffer from high rates of the so-called Western diseases: obesity, type 2 diabetes, cardiovascular disease, and cancer.

1. Eat food, not too much. Mostly plants.

2. Avoid food products that contain more than five ingredients...(The more ingredients in a packaged food, the more highly processed it probably is.)

4. Avoid food products that make health claims. (For a product to carry a health claim on its package, it must first have a package, so right of the bat its more likely to be a processed rather than a whole food...Generally, it is the products of modern food science that make the boldest health claims, and they are often founded on incomplete and often bad science. The healthiest food in the supermarket--the fresh produce--doesn't boast about its healthfulness--...because [it] doesn't have the packaging.)

5. Eat only foods that will eventually rot. (...the more processed a food is, the longer the shelf life, and the less nutritious it typically is. Real food is alive-and therefore it should eventually die.)

6. Stop eating before you're full.

7. Plant a vegetable garden if you have the space, a window box, if you don't.

8. Cook. (...Cooking for yourself is the only sure way to take back control of your diet from the food scientists and food processors, and to guarantee you're eating real food and not edible food-like substances, with their unhealthy oils, high fructose corn syrup, and surfeit of salt. Not surprisingly, the decline in home cooking closely parallels the rise in obesity, and research suggests that people who cook are more likely to eat a more healthful diet.)

9. Eating what stands on one leg [mushrooms and plant foods] is better that eating what stands on two legs [fowl], which is better than eating what stands on four legs [cows, pigs, and other mammals).

10. Break the rules once in a while. (Obsessing over food rules is bad for your happiness, and probably for your health too.)

Speaking of healthy eating, my husband and I joined a Community Supported Agriculture program. We pay $5 a week for 3 lbs. of locally grown fruit that we pick up from a farm that's down the street from where we live. You can't get any fresher than that. If you're interested you can find a CSA program near you at localharvest.org.

Friday, February 26, 2010

We got the call yesterday. We passed the homestudy process. We're now licensed for foster care. It's been a tedious process, but well worth it. Thanks everyone for your phone calls and support during this emotional time. Love you.

Sunday, January 3, 2010

It took me a while, but I've almost mastered the art of caring for myself, so I can care more for others. So indulge me why I list what my guilty (or not-so-guilty) pleasures of 09 were, what healed me this past year, and what my plans are for 2010!

My favorite things of 09:

-beach trip with family-dark chocolate: Yum! Full of antioxidants, no artificial ingredients, organic, and fair trade certified. Just an occasional guilty pleasure from Whole Foods or World Market.-herbal tea: Herbal tea is so calming and healing. I love this sweet cinnamon spice tea warmed up with milk and honey to sweeten it.-brother returning from his mission-reading some close to perfect books (The Glass Castle, Left to Tell, The Book Thief, Pope Joan)-smoothies, sushi, coconut ice cream-a place to live with a fireplace and a garage (Necessities for snow days.)-my husband starting his Phd and lovin it-new and old friends-Death Cab concert in the mountains-farmer's market-Fit TV; all kinds of exercise routines almost any time of day and being well enough to exercise-Hautelook; If you want designer clothes (nice quality, comfy, soft, long lasting clothing) for Target prices, Hautelook is the best. I've bought a few things and am NEVER disappointed. Everything I've bought from there has been under $20!

-Shikai; I LOVE this hair care. It's all natural and it's safe for colored hair. It extends the life of your hair color by weeks and weeks and weeks and weeks. It uses natural things like henna to make your hair look blonder, or redder, or darker, and shinier!

-friends and family (all my adorable nieces and nephews)-faithand lots of prayer-lots of hard work micromanaging all aspects of my life that increase my pain-fish oil, vitamin D, and acidophilus (healthy bacteria; good for digestion)-the perfect combo of medications (took awhile to find the right mix for such a complicated illness, but I'm finally there!)-physical therapy-my T.E.N.S. machine (I could not exist without it. It keeps my pain to a minimum.)-ice, ice, and more ice. (Those with pain know ice is a miracle for us!)-lots and lots of veggies-less acid-no milk or gluten-deep breathing-natural cleaning and beauty products (Less chemicals equal less inflammation, and yes inflammation is the battle I'm constantly fighting. Less inflammation equals less pain.)-less stress-love and laughter-exercise (I'm able to do it everyday now, yeah baby!)-blogging (Reading and writing of course. Keep writing girls, your posts lift me!)-meditation (Lovin Eckhart Tolle. First person to every successfully get me to shut my dang mind off!)-walking, walking, and more walking-sun-volleyball-good movies (Silly chick flicks, as well as the deep thought provoking stuff.)-taking care of myself and then others-work (Yes work, when you're pain is less and work becomes real again, it heals you.)-music-parties (Can't forget the parties. They are my fave!)-cooking healthy meals for my hubbie-service, helping others heal from illness

My vision of 2010:

I read on Kris Carr's crazy sexy life blog that she has a vision board for all her dreams of the new year. It's just a cork board where you put somewhere special and you decorate it with your creative dreams, ideas, and goals. My husband and I made one with our creative, family, career related goals. Here's ours and the tools that Kris Carr suggests to make your own:

Vision boards work because they allow you to turn your dreams on. They create a path that leads to action. Look at your vision board like a road map, allow yourself to believe that you are powerful beyond measure and that you deserve to live your best life. Your vision board can be a very helpful compass. But it’s not enough to post stuff and then sit on your sofa and do nothing. Plot and plan your attack! Your tools: magazines clippings, prayers, sayings, quotes, paper to write stuff on, scissors, glue & poster board, thumb tacks & cork board, imagination, freedom, and a positive attitude, childlike whimsy, giggles, and a sense that anything is possible. 2010 is the perfect time to start a board. You have nothing to lose – well, except doubt and the blues. Share your powerful stories with us! We’d love to see your boards and hear how they’ve transformed your life. Peace and thumbtacks, Kris

Some of my own ideas: Become a certified nurses assistant to boost my resume. Get a job as a caseworker. Take a trip with my husband and my girlfriends. Foster children in need. Adopt. Read really great books and not just the informative ones. Forgive, forgive, forgive. Start a book club. Dance. Smile. Kick the rest of my pain in the butt with lots of physical therapy. Exercise everyday. Be a good friend, sister, aunt, wife, and daughter. Serve, serve, serve.

Thursday, December 24, 2009

So I asked for a baby for Christmas but I didn't get one. Lame. Maybe I'll get one next year?

My husband and I hope one day to be parents (the sooner the better), and I hope one day to be pregnant. In the mean time--although the wait can be extremely tiring and trying--I can be positive. The more you struggle, the more you have empathy for others struggling. I also look forward to being a mom one day so I have more empathy for the mom's in my life too. (Love you girls!)

I have a lot of friends and family members that have kids. I've heard a lot of discussions among them about 'What not to say to a preggo woman,' and I hear a lot of discussion about how people without kids 'just don't understand what it's like to have kids'. There is amazing advocacy out there for new moms and pregnant women, which is awesome cause they completely deserve it! I'd like to start a conversation about advocacy for people without kids, and who can't have families the conventional way, or as quickly as others. There aren't as many of us, so maybe this type of advocacy isn't given as much thought. So while I am careful about what I say around moms or pregnant women, I'd also like to call for similar courtesy towards us non-moms.

So here's a list of what not to say to women who don't have kids, and who aren't pregnant (No exaggeration, these are real life things that have been said to me and my friends who are struggling to have families.)

1. It's your turn to be pregnant! (said by a preggo woman to a friend of mine struggling to have children).2. Holidays must really suck without kids. I would be so bored on holidays, if I didn't have kids, like you guys.3. Being a mom is so awesome, you should really give it a try.4. Why haven't you had kids yet? You must not be into the kid thing?5. What is taking you so long to start a family?6. You just really don't get what it's like to be a mom. You have no idea, being a mom is seriously the best thing ever.

Just some thoughts. This isn't a bitter post. Seriously, there are no hard feelings. I know most people have really good intentions. I just wanted to raise some awareness. And most importantly I'd like to thank all the wonderful people in my life that hug me when I'm sad about not having a family, and are always sensitive and supportive as we try to start our own family. I feel blessed to have so many supportive people around me!

Saturday, December 19, 2009

I'm interested to know what y'all think about the health care reform that is currently taking place. Also, how do you feel about our health care system in general? Please comment and let me know! This should not be a partisan issue; it should be about relieving people's suffering.

In light of current health care reform taking place, I read this really great book The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care, by T.R. Reid. I loved this book! The author travels around the world to see how other developed countries manage health care. He discusses what is and isn't working in other systems and then explains ways in which we can incorporate aspects of other successful systems into our own (without completely revamping the current system). Here are some of the strengths of the other systems that I found interesting.

1. England gives incentives to doctors that keep their patients healthy. In the UK "the greatest boon to...almost every other British general practitioner, has been an experimental payment called the Index of Quality Indicators. It's an effort to pay for results--to give a doctor more money if he treats his patient successfully and keep them healthy..."(122-123) This is a wonderful way of marketizing preventative medicine.

...modern epidemiological studies make it clear that preventative medicine--the discipline sometimes called public health--trumps individual treatment as a means for keeping large numbers of people healthy, wealthy, and wise...at a time when national health care budgets are stretched to the last penny just caring for the sick, it can be hard to find additional money for preventative treatment of those who are healthy. This means the health system needs a strong incentive--an economic incentive--to invest in preventative health care. Of course, governments invest in preventative care out of basic altruism; it is government's job, after all, to protect people. But it helps considerably if there is an economic motivation--an incentive structure that encourages the system to invest in prevention. Public health costs money--billions of dollars per year in the major economies--and the return on that spending may not be seen for years or decades. To get serious preventative care, therefore, you need an incentive structure that encourages long-term investment. This is where the national health system comes in. In a nation with a unified health system that covers everybody--which is to say, all the industrialized democracies of the world except the USA--it clearly benefits both the population and the system to invest in public health. But in a fragmented, multifaceted-system nation like the United States, the economic incentives for preventative care are dissipated. With numerous systems and payers, the temptations is to shift the expense of preventative care to somebody else. (185-186)

2. In France they save insane amounts of money by using digitialized records. "This carte vitale (green plastic credit card)...contains the patient's entire medical record, back to 1998 ...and it is the secret weapon that makes French medical care so much more efficient than anything Americans are used to...That's why French doctors and hospitals don't need to maintain file cabinets full of records. It's all digitized. It's all on the card. In addition to the certainty of the process and the resulting peace of mind, this national billing system creates major financial savings...the expensive layer of paper handlers found in every corner of American medicine doesn't exist in France." (57-59)

3. Many of these countries have privatized doctors and hospitals, but they use not-for-profit insurance companies that compete for prestige. So for example, "...on a national level, Germany offers universal care through private insurance that is available to everybody. The intense rivalry among the sickness funds demonstrates that there can be elements of the competitive free market even in a nonprofit health insurance system." (81)

4. Many developed countries subsidize medical school for doctors so they graduate with little or no debt.

I'm grateful in many ways for my own personal health care system struggles (getting denied coverage because of a 'preexisting condition,' getting many claims denied for no reason, etc.) because it opened my eyes to an important cause I can be passionate about! I only wish I had been an activist in this cause long before it became personal. Most of us think it won't happen to us, and we may be critical of others suffering through it, until us "hard working, healthy, educated people" get sick and lose coverage.

People who are uninsured are 25% more likely to die of treatable diseases than people of the same age cohort who have insurance...the Institute of Medicine concluded that 18,314 Americans die each year because they don't have health insurance and thus can't get the treatment that would save their lives...by 2009, there were some 45 million Americans who spent at least part of the year without health coverage. The Americans who suffer and die are not, for the most part, homeless or addicted or desperately poor. Most of those who die for lack of medical treatment in the world's richest country are working Americans who run afoul of the nation's complicated and restrictive health insurance labyrinth, both public and private. (208-209)

I've learned that there is no perfect health care system. I know we can learn from other successful developed nations and strengthen the weak links in our own system. Most developed nations successfully provide care for their citizens with privatized doctors and hospitals; yet the needy or struggling are still cared for. There are very few developed countries that implement true socialized medicine principles; yet like I said, everyone gets care.

All the [developed] countries like us have already made the essential moral decision--every person shall have access to a doctor when needed--and all of them have developed mechanisms to make that guarantee a reality... all the other rich countries provide high-quality, universal care, and yet they spend far less than the United states does. (162)

When pollsters ask the basic question--"Do you think everybody has a right to medical care when they get sick?"--More than 85 percent of Americans answer that health care is a basic human right. And yet our nation does not provide it. The result is that the world's richest nation allows twenty-two thousand of its people to die each year from treatable diseases. (217)

D. Todd Christofferson said that "Throughout history, the Lord has measured societies by how well they cared for the poor" (read the rest of the address here). It's important that we remember those that are poor in regards to health care, and it's essential that we take a stand for them.

Sunday, October 18, 2009

Laying in bed sick can get incredibly boring! I'm able to do a lot more now, but I still have to spend a significant part of my day resting/recovering and that can get old. Being in the house a lot has forced me to be creative with things to pass the time. It's good to have FUN when you're suffering. I'm not the craftiest, stay-stay-at-home-making-goodies-in-the-kitchen kind of person. I'm more of a go-out-and-do-active-fun-stuff kind of girl, but being sick and stuck at home has helped me find new talents! And finding new talents is good for your brain according to Martha Beck. She says...

In his fascinating book The Talent Code, Daniel Coyle describes how the brain reacts when a person develops a new skill. Performing an action involves firing an electrical signal through a neural pathway; each time this happens, it thickens the myelin sheath that surrounds nerve fibers like the rubber coating on electrical wires. The thicker the myelin sheath around a neural pathway, the more easily and effectively we use it. Heavily myelinated pathways equal mad skills.

When I first got sick I was mad I couldn't do all the things I used to, and I was not loving the idea of having to find new talents, but thankfully I have awesome friends that showed me that you can do creative crafty stuff at home that isn't super cheesy or difficult. (Love you girls!) I thought this post might also be useful to my stay-at-home mom friends and my friends who are caretakers to a sick spouse. (Thanks for all your awesome 'pass-the-time' ideas!) Here are some fun stuff you can do while you're stuck at home.

1. Halloween Decorations: We painted pumpkins this year which is really fun! You can paint them with a spooky theme or a fall-ish theme.

Here is a website she sent me with fun Halloween treat ideas...www.ourbestbites.comGo to the website to get details on how to do it. All you need is some mason jars, mod-podge, and tissue paper.

2. Like I said, I'm not the craftiest person, but I love making stuff and being creative. Here are some things my friends have made. Some of them have even made it profitable to be stuck at home. Scanning etsy.com can inspire you with all kinds of creative ideas!

3. Knitting sounds so grannyish (not that there's anything wrong with granny's) but it is so relaxing. (This was another great idea from my friend MA). I promise it's really easy! You can buy kits, yarn, and flowers at Michael's craft store. It's really inexpensive.

In addition to these crafty projects, here are some other activities that may help you pass the time (and have some fun).

4. You can try out Netflix. The movies come straight to your door if you can't get out. You can get TV shows and watch some right away on your computer. (I recommend The West Wing- 7 awesome seasons. I love Gilmore Girls and the new show Community is hilarious.)

5. Start a book club. I loved the last book club I was in. It doesn't take a ton of effort, it's a one hour a month commitment to meet up, and it really passes the time. It got me passionate about reading and gave me new ideas of books to read while I was taking time out in bed. Connect with other readers on GoodReads

6. Become an activist. Find something you're passionate about. Read, research and get the word out through blogging, Facebook, email about how to help. Even if you're not mobile or physically capable of helping, you can do a lot from your home to help.

7. Serve. Try to find one person a day you can serve. I know it may seem difficult when you're sick and/or stranded, but you can still serve from your home. Even if it's just a phone call, note, or donation. You can do important loving acts of service. Early during my illness I felt inspired to pray everyday and ask "Who needs me to today?". I'm grateful for that inspiration, the opportunity to serve has in so many ways carried me through the most difficult days. Everyone can use a little love. I'm so grateful for the phone calls, card, emails, gifts of money, and packages that my sweet friends and fam sent me while I was extremely ill. I will never forget your examples of service!

P.S. I'm always looking for new ideas so please share if you have any!

Friday, October 2, 2009

The title of this post is from a song I love by Bishop Allen. Okay, I've been driving my husband crazy with all the pictures I've been taking. I just tell him that I've spent the last few years sick and in bed, so now I have to document every time I leave the house :) Every time we do something fun, and I feel healthy and 'normal,' I want to remember it. I will never take living regular life for granted again! I know the blessings of working, going to a movie, eating out, going on a walk, getting a full nights sleep, and so on can be fleeting and are things we can not take for granted! Everything looks so beautiful when you're not in a ton of pain. So here's a pic of a big milestone for me. (I've gone out of my way to keep my identity and location anonymous on here because I have readers that I don't know. I figured this pic isn't too telling of what I look like.) It's a pic of me playing a VB game for the first time in 3-4 years. Yeah!!! My sweet husband offered to document it for me. It's a good thing I'm somewhat 'back in the game' 'cause I'm helping coach the church volleyball team.Being sick has changed my perspective on everything. Including simple things like doing the dishes. I love to do the dishes because if I'm doing them it means I'm well enough to get out of bed and stand for a while! I had a professor tell me this story once. It really helps to put things into perspective.

Sometimes, as humans, we only see things from a narrow perspective. We look through the keyhole of a door and assume we see the whole picture. Imagine you are walking down the street and you hear screaming behind a door. You run to the door where it's coming from. You can't open the door. It's locked. You peak through the keyhole and see several masked men with knives surrounds a screaming woman strapped to the table. You panic and try to open the door. You are scared to death.

What you don't realize is that if you were in the room with her and saw the entire sequence of events that led to her being strapped to the table, instead of just a short keyhole perspective, you would know that she needed an emergency c-section to save her life and the life of the baby. You would see that the masked men are doctors not murders. If you were in the room and saw clearly what was happening from the beginning as well as after the surgery, you would see her alive and holding her baby. You would see her thanking the 'masked men' for saving her life. We see the crisis in life and panic trying to fix it. God is in the room. He sees the beginning and the end clearly. He has complete perspective, and He knows what we need. (Dr. Randy L. Bott)

SURVIVAL

If you're not chronically ill, you're welcome here too! The posts can help you live a happier and healthier life with less illness, stress, and aging! I've been very sick for four years. Current research shows that the quality of life of patients with my particular illness is equal to those with end stage renal failure. To survive the physical illness and pain I continually experience, I am working with a team of good doctors. I am also constantly researching chronic illness. These two things are helping me to live a happy, fun, fulfilling life with chronic pain! I hope to help others survive the physical,emotional, social, mental, and financial difficulties of having a physical illness. I will post weekly advice for each of these specific aspects of suffering.

I love the painting above, L'anniversaire by Marc Chagall. The artwork embodies my life. The suffering and pain, (notice the pale faces, dark mournful clothing, and simple apartment) painted with the brightness of living life (the flowers and bright colors). The husband is bending over backwards to serve and love his wife, and as they love and serve each other, they are lifted together.

ABOUT ME

Life can be scary if you're chronically ill, but it can also be fun and amazing! Even though there are thousands of chronically ill patients in the United States, 'traditional medicine' is still figuring out how to treat chronic illness. It's difficult for chronically ill patients to find the time and energy to seek out all the bits of information I've learned from various books, doctors, and websites over the past four years. I created this blog to give people with chronic illnesses simple and easy access to valuable information and advice. I also have my B.S. in Psychology. That being said, I'm far from perfect so I welcome your advice and ideas as well!
I try not to let my illness define me, but I am passionate about helping others survive. I love music, books, movies, and the beach! I also enjoy dancing and throwing fun parties! As I learn to manage my illness, I hope to return to doing some of my favorite things which are: water skiing, wakeboarding, surfing, and playing volleyball, basketball, and tennis. And of course, I can't wait to travel again!

Important advice

In her book, You Don't Look Sick: Living with Invisible Chronic Illness, Joy H. Selak teaches "The quiet activities illness demands can train patients to listen, a skill they will need to further perfect. Chronically ill patients who aspire to live better will need to listen to what their body is telling them and understand they cannot fix everything just by trying harder. They will need to spend time listening to the emotions, fears, and anxieties tied to the past and sort out what they can now release. They will need to listen less to the negative people in their lives, and with greater attention to the people willing to support and share with them. They will need to listen more closely to their own inner and spiritual selves as they learn new ways to navigate life with illness."

List of Chronic Illnesses

AIDS, Allergies, Arthritis, Autism

Asthma, Cancer, Chronic Fatigue Syndrome, COPD, Crohn's Disease

Diabetes, Digestive Problems, Endometriosis, Epilepsy

Fibromyalgia, Heart Disease, Interstitial Cystitis

Kidney Disease, Liver and Gallbladder Diseases

Lupus, Multiple Sclerosis, Osteoporosis

Polycystic Ovarian Syndrome

What are your symptoms in relation to your chronic physical illness?

IMPORTANT BOOKS

When You're Falling Dive. Lessons in the art of Living by Mark Matousek

The Culprit and the Cure by Steven Aldana (a great source for extensively researched ways to improve your health)

You Don't Look Sick! Living Well with Invisible Chronic Illness by Joy Selak, Steven S. Overman

Left To Tell by Immaculée Ilibagiza with Steve Erwin (powerful story of genocide survivor)